MS Fatigue Unchanged by Long-Term Programs, Raising Questions About Its Progression

March 1, 2021
Marco Meglio
Marco Meglio

Marco Meglio, Associate Editor for NeurologyLive, has been with the team since October 2019. Follow him on Twitter @marcomeglio1 or email him at

The authors noted that future studies evaluating the time course of fatigue in patients with multiple sclerosis are needed.

An abstract presented at the Americas Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS) Forum 2021, February 25–27, showed that patients with multiple sclerosis (MS) who entered a long-term fatigue program remained unchanged after a 5- to 6-year period, raising questions about whether fatigue is progressive within this patient population.1

Senior author Cinda L. Hugos, MS, PT, associate professor of neurology, Oregon Health & Science University, and colleagues compared 38 participants who completed either the Fatigue: Take Control (FTC; n = 15) or the MS: Take Control (MSTC; n = 23) fatigue self-management programs.

Upon completion, t-tests revealed no significant differences in Modified Fatigue Impact Scale (MFIS) scores within or between groups at the 5- to 6-year follow-up compared with any other time point. Additionally, chi-square tests showed that regardless of group, there was no significant difference in the proportion of those who completed any of the potential behavior changes.

Hugos et al concluded, “Although this result may reflect sampling bas, the stability in fatigue over time in both groups calls into question the belief that fatigue is progressive in all, or even most, people with MS.” They also concluded that future studies evaluating the time course of fatigue in MS and the duration of fatigue management interventions are needed to elucidate this matter.

READ MORE: Frenkel Coordination Exercises Demonstrate Reliability, Fatigue Benefits in Multiple Sclerosis

To the authors’ knowledge, this was the first study that evaluated the effects of a behavioral intervention for MS fatigue beyond 12 months. The study originally began as a 6-week randomized controlled trial that compared both programs.

Prior analysis showed no significant improvements in MFIS at program completion, 3 months or 6 months later in the FTC group compared to the MSTC group or compared to scores at baseline (n = 204).

Researchers decided to continue their operation after a subset group (n = 74) of patients in the FTC intervention showed significantly better MFIS scores compared to the MSTC group and compared to their baseline in a 12-month follow-up. They concluded that that the effectiveness of the FTC intervention may take more time, causing the need to evaluate in a more long-term setting.

Hugos and colleagues attempted to contact all 74 participants who completed 12-month follow-ups to administer the MFIS and a 17-item questionnaire about behavior changes implemented since program completion, but only 38 completed the MFIS and all but 1 of these completed the behavior change questionnaire. 

Fatigue has been a continual problem for patients with MS, and currently has no treatment options approved to treat it. Those with higher levels of fatigue have shown to have greater comorbidities and economic burdens compared to those with low fatigue.2

A study presented at MS Virtual 2020, the 8th Joint ECTRIMS-ACTRIMS meeting, September 11–13, 2020, showed that the annualized number of outpatient visits, emergency room visits, and hospitalizations are greater in those with increased levels of fatigue among patients with relapsing-remitting MS compared to those with lower levels.

A number of presentations at this year’s ACTRIMS Forum have highlighted the concern for the burden of fatigue. NeurologyLive recently sat down with Allitia DiBernardo, MD, global head of medical affairs, neurology, Janssen Pharmaceutical, to discuss findings from 2 studies they conducted on the impact fatigue can have, including on a real-world population.

Click the link below to watch what DiBernardo had to say, as well as why the findings were so significant.

For more coverage of ACTRIMS 2021, click here.

1. Norton J, Joos S, Cameron M, Hugos C. Impact of multiple sclerosis fatigue self-management program 5–6 years later. Presented at ACTRIMS 2021 Forum; February 25–27, 2021. Abstract 218.
2. Le H, Ken-Opurum J, Maculaitis M, Sheehan J. Comorbidity and economic burdens of fatigue among patients with relapsing-remitting multiple sclerosis in the United States. Presented at: MS Virtual 2020 Joint ACTRIMS-ECTRIMS meeting, September 11–13, 2020. Abstract P0857.